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Marge,Maggie &Donna

Michele23
Posts: 167
Joined: Mar 2011

Know Marge and Maggie had scans done yesterday and Donna today.Just wanted you all to know I'm sending good thoughts your way.Waiting with all.Take care,Michele Dx95 FNHL3

miss maggie
Posts: 929
Joined: Mar 2010

Dear Michele,

I must of made a mistake and posted I was having a scan. Sorry. Yesterday, May 9 I only saw my
oncologist. My oncologist didn't want me to have a Pet Scan at this time. My last 2 Pet Scans
were negative for cancer. When my small bowel perforated in Sept 2009, and the surgeon did the
resection, he cleaned out the surrounding area also. Possibly removing any cancer cells in the
surrounding area. Note, I say possibly. Don't want to jinx anything. For a precaution, I did
receive Rituxan once weekly for 4 weeks in Dec 2009.

I did not have NHL in my lymph nodes, just the small bowel. My sub-type does not call for Rituxan maintance.

I will be seeing the oncologist in Sept 2009. Maybe then I will get another Pet Scan???

Thank you for sending me good thoughts. I send the same to you. Love Maggie

onlytoday's picture
onlytoday
Posts: 585
Joined: Jun 2010

Thanks for asking. No scan and no onc visit. Had to postpone onc while I had my second capsule endoscopy yesterday. Did one a week ago and nothing had cleared through the small bowel so we had to re do. I didn't eat from Saturday afternoon until last night (Tuesday)!! Dropped atleast 4 more pounds on that one!! They know the NHL is in my stomach and now think it's in the small bowel. Will see onc on the 17th to review these results and decide what to do. Unfortunately it is (or something is) causing symptoms (diarrhea since Dec) so it may mean more treatment. Ugh.

Will keep all posted. Thanks again.

Love,
Donna

miss maggie
Posts: 929
Joined: Mar 2010

Dear Donna,

If it is in the small bowel, can you have surgery and have the doctor take a biopsy?
And during the surgery clean out the surrounding area of the small bowel.

See below my DX and why I am asking you:

I just saw my oncologist may 9. My last 2 pet scans were negative for cancer. I have no
symtoms and my doctor considers me in remission as of Jan 2011. My small bowel perforated
in Sept 2009, and was resected. My doctor informed me the NHL was not in my lymph nodes,
but the small bowel only. She told me when they operated and took a biopsy, they cleaned out the surrounding area also. Probably got it all???? Hopefully. Anyway, I did have Rituxan
treatment in Dec 2009 as a precaution.

What do you think??? Maggie

onlytoday's picture
onlytoday
Posts: 585
Joined: Jun 2010

Maggie,

I'm not sure but it sounds like a possibility. The only thing they have said thus far is possible Treanda if they find it in the bowel. They haven't discussed surgery but I should get a better idea on Tuesday and then I get my second opinion on May 31 at Sloan Kettering in NY. If they could just get it out I would be thrilled.I guess it depends on whether they find a lot or if it contained in one area of the 21 feet of sm. intestine. Thanks for the info! I will keep you posted.

Love,
Donna

miss maggie
Posts: 929
Joined: Mar 2010

Dear Donna,

I will be thinking of you on tuesday. I am glad you will be getting a second
opinion on May 31.

I don't want to worry you. Please ask your doctor if there is a possibility of
your small bowel perforating? That's what happened to me.

Yes, please keep me posted. All my love and prayers to you. Maggie

onlytoday's picture
onlytoday
Posts: 585
Joined: Jun 2010

Maggie,

I'm not sure but it sounds like a possibility. The only thing they have said thus far is possible Treanda if they find it in the bowel. They haven't discussed surgery but I should get a better idea on Tuesday and then I get my second opinion on May 31 at Sloan Kettering in NY. If they could just get it out I would be thrilled.I guess it depends on whether they find a lot or if it contained in one area of the 21 feet of sm. intestine. Thanks for the info! I will keep you posted.

Love,
Donna

onlytoday's picture
onlytoday
Posts: 585
Joined: Jun 2010

Sorry for the double posts. This sight sure can be a challenge!

Michele23
Posts: 167
Joined: Mar 2011

How can they tell if it's in the small bowel? What kind of symptoms?Since having Treanda my pelvis area is so bloated.Thanks Michele

onlytoday's picture
onlytoday
Posts: 585
Joined: Jun 2010

Michele,
My symptoms have been diarrhea since December 7th. Ugh. At first I tested positive for C-diff and after 3.5 months on antibiotics I finally tested negative. Now they aren't sure I ever had it because there is a high incidence of false positives for c-diff. A partial blockage from lymphoma would cause my symptoms as well.

Hope that helps. Do you have other symptoms than bloating? What has your doc said?

Donna

onlytoday's picture
onlytoday
Posts: 585
Joined: Jun 2010

Michele,
My symptoms have been diarrhea since December 7th. Ugh. At first I tested positive for C-diff and after 3.5 months on antibiotics I finally tested negative. Now they aren't sure I ever had it because there is a high incidence of false positives for c-diff. A partial blockage from lymphoma would cause my symptoms as well.

Hope that helps. Do you have other symptoms than bloating? What has your doc said?

Donna

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